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Saturday, September 1, 2012

Bone Black

Ashes.

They have always been part of our lives. We sang of them in our nursery songs. We heard our mothers speak of a
princess who labored in cinders and dreamed of a prince. And as we grew, ash became less magical
and more mundane. It was in our
science lessons. We snickered to
hear that messy wood ash was needed to make soap. That seemed so wrong, a contradiction terms.

The years past and I found ash was needed to make so many
things. Cinder blocks are called
cinder blocks because they contain ash.
The ash makes them strong yet light: a perfect building material. And I learned about charcoal. I learned the silky beauty of writing
with a charred vine or the compressed stick.

The years past and I grew beyond drawing with charcoal and
focused on paint. One day I found a new black paint that
quickly became my favorite. The
color was so deep and dark. You
could fall into it and never return.
I wondered at the color’s name: Bone Black. I thought it a joke, for bones are off-white like
ivory. Bones are the color of old
lace… unless you burn them.

This is “Bone Black” a jacket for Catherine Fairchild. We were introduced to each other by Susannah Fox who interviewed Catherine about rare disease. She mailed me this jacket months
ago, but time had passed and yet the jacket hung within my closet. It hung on its hanger, the color of
bone beside jacket after jacket in black.

As I learned more about Catherine and her story I could see
why she would pick this color, this jacket. Catherine is the mother of two wonderful children: Ella and
Billy.

Ella was already a rosy-cheeked toddler when Billy was born
in 2002. The family was happy that
Ella would soon have a baby brother.
Catherine had a routine mid-term sonogram during her pregnancy and
noticed the report contained CPC codes.
She did not know what that represented so like any good e-patient she
registered for 48-hour JAMA subscription.
She found articles that explained those codes were soft markers for many
developmental disorders. She
then went through a more thorough sonogram that was inconclusive.

As she neared term Catherine grew concerned that the
pregnancy was not doing well. He
was not moving, as he should.
Catherine had another sonogram and was told that she would need a
C-section immediately. The
placenta was bad, amniotic fluid was gone and without intervention he would
not survive.

Billy was 5lbs at birth and within two weeks birthmarks
appeared on his back. She told her
pediatrician about the café-au-lait birthmarks. Could it be the sign of some
type of disorder? The doctor brushed off her concerns. BB continued to grow and meet his
milestones, but at three years his coordination was sufficiently poor that the
special education teacher at school said Billy should see a pediatric
neurologist.

Again, tests were inconclusive.

A year later, four year old Billy played really hard with a
group of boys and then began to limp.
He had a occupational therapy appointment the next day and the therapist
concurred with Catherine’s worries, there was something wrong with Billy. He was
x-rayed to determine if he broke a bone.

The x-rays determined Billy had lesions all over his
bones.

Billy has MAS (McCune-Albright Syndrome) a rare genetic
disease estimated to effect between 1 in 100,000 to 1 in 1,000,000. Characteristics of the disease include
café-au-lait marks on the skin, and deformities in the bone known as fibrous
dysplasia, and endocrine issues.
Many individuals with this disease suffer multiple bone breaks. Billy has had several major orthopedic
surgeries to address the problems with his bones.

Billy is doing well, though he spends a lot of time in a
wheel chair. He loves legos and
enjoys school. His mother supports
him in all his endeavors.

I painted her gown the color of bone. She stands tall and defiant as wind
whips at her gown. Ella clings to
her back and Billy is in her arms.
Billy holds two oversize BB’s as though they are a baby’s rattle.
Catherine holds scrolls that represent the law and information. She is e: empowered, engaged, and
expert at the disease she is fighting.
No wind can lift her off her mooring. She fights for her BB.

I am glad to know Catherine. I am happy to paint her thus, beautiful and defiant. I used very little of my favorite black
color in this painting. Her colors
are her own. Bone black is created
when bone is burnt at a low temperature, to get white the temperature must be
very high. The crucible purifies the
color.

The Walking Gallery Mini Doc

About Me

Regina Holliday is a resident of Grantsville, Maryland. She serves on the board of the local non-profit The Highland Thrift Shop. She is a member of the Grantsville Rotary Club. She is also Asst. Cubmaster of Pack 460 Cub Scouts.

In addition, Regina serves as a parent advisor to the Garrett County School Board Health Advisory Committee. She is also a member of the Garrett County Chamber of Commerce and The Garrett County Arts Council.

Ms. Holliday is an activist, artist, speaker and author. You might see her at a health conference painting the content she hears from the patient view. She is part the movement known as participatory medicine. She and others in this movement believe that the patient is a partner with their provider and both should work together as a team.

Regina is a mother and a widow; she speaks about the benefits of health information technology and timely data access for patients due to her family loss. In 2009, she painted a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her late husband Frederick Allen Holliday II and his struggle to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities. Her paintings became part of the national debate on health care reform and helped guide public policy.

She also began an advocacy movement called “The Walking Gallery.” The Gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits. Paint and patients, pills and policy all come together within The Walking Gallery of Healthcare. This "walking wall" of 330+ individuals who wear personal patient narrative paintings on their backs is changing minds and opening hearts. They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. They are providing a patient voice, and by doing so, are changing the conversation.

She published a book with the Health Informatics Society of Australia (HISA) entitled: "The Walking Wall: 73 Cents to the Walking Gallery."